Tag Archive for: rare childhood cancer
Isabella Santos Foundation Intern teams were challenged with creating a 7 day social media rare pediatric campaign to help raise awareness.
Through My Eyes is a series in which those affected by childhood cancer share a behind-the-scenes look into what it’s like to be in their shoes. Read every perspective. Become aware and donate to help create solutions for kids fighting rare pediatric cancer.
- Perspective: Cancer Family
- Name: Tom & Lynn (parents), Kayla & Noah (siblings)
- Daughter: Mackenzie, 4 years-old
- Cancer: DIPG
- Diagnosed: June 22, 2018
- Treated at: Levine Children’s Hospital
4 year old Mackenzie was diagnosed 15 months ago with an inoperable, non-curable brain tumor called DIPG. We shared perspectives from her mom and dad on what’s going through their mind during scary and uncertain times: We Are Cancer Parents & Behind the Minds of a Family Fighting a Terminal Cancer Diagnosis. Read how Mackenzie’s terminal cancer diagnosis affects her siblings as featured on our social channels (Instagram & Facebook) on 9/25/19.
[#ThroughMyEyes | Kayla Barron] “Empty. That’s how I feel. It’s not just one thing that makes me feel this way. Its many things stacked on top of each other to create one word. One word that means a whole bunch of things. One word with thousands of meanings behind it. One word that explains everything. It’s almost like being numb to a certain extent. Sometimes you feel and sometimes you don’t. Other times you choose how you feel. Are you going to brush off what’s bothering you, or will you choose to embrace how you feel?
Most of the time I don’t talk about it, mainly because most people wouldn’t understand and nobody really asks. And I think that’s one of the hardest things about being the sibling of a cancer patient. Mom and Dad are always focused on the sick child, then they have jobs to deal with, the family to feed, bills to pay. It’s not easy. Nobody said it would be. Eventually you get used to being overlooked. Not saying just because you’re used to it, doesn’t mean it doesn’t still hurt. Of course it still hurts, pain doesn’t just go away like that. It’s always there no matter how hard you try to cover it up. Pain will always be there, even if you got over it, even if it doesn’t bother you anymore, even if you forgot about it. That pain will always come back.
And in that moment, when the pain comes back, you just have to stand up look yourself in the mirror and say, “I believe in you”. Because you can’t just give up as soon as one thing knocks you over or one person says you can’t.
I know what it’s like to feel empty. Broken. Lost. It makes me feel like no matter what I do or say, I make things worse. I make things harder for everyone else. I feel like I try so hard to make everyone happy but in the end I always feel alone. Because I took all my happiness and gave it to other people, not leaving enough for myself. And that’s where it goes downhill. Where everything just seems to stop and you couldn’t care less about what happens next. Because in that moment, emptiness, becomes your only feeling. But even after this happens somehow, some way you still manage to put a smile on your face.”
[#ThroughMyEyes | Tom Barron] “I lost my father when I was 16, I’ve never truly recovered from that, I’ve fought my whole life trying to figure out why it’s bothered me so much… I never got the chance to make him proud of me. I don’t want Noah or Kayla to grow up wishing they had done something different.
Noah is high functioning Autistic and Aspergers; it’s hard enough for him to function in regular everyday life. I worry this tips the scales in the wrong direction and he chooses to give up instead of fight.
Kayla is a different child all the way around. She has passion, is artistic and outgoing. I fear she feels unheard, unwanted, unaccounted for, when in reality we spend effort to make that not true. I fear she takes her pain out on herself and not let us help. I fear she starts cutting again and we lose her too.”
[#ThroughMyEyes | Noah Barron] “I am heartbroken. It crushes me, emotionally, to know this horrible disease exists and little to no progress has been made to cure it. I constantly question in my head… how long does she have? How long until she shows symptoms? Why did it have to be her? And wondering if the tumor will grow. So for now I live in the moment and pray to God for guidance. I listen to Imagine Dragons, talk to my friends and my therapist to try and let out my pain.”
[#ThroughMyEyes | Lynn Barron] “I worry that I am not listening to them, that they feel left out and how is that impacting them. Most, if not all, of the focus is on Mackenzie. People often ask how Mackenzie is doing and just assume Kayla and Noah are fine. When in fact, I don’t think they are fine. I think they feel left out. They are hurting. They are watching their baby sister take medicine they know is not healing her, but merely keeping her tumor stable. I often wonder what they are thinking and feeling. They are two very different people.
Noah is on the spectrum. He is high functioning autistic / Asperger’s. Which means he is highly intelligent, can articulate thoughts well, but lacks in some social skills. He can get hyper focused on one topic and doesn’t always know when to move off the topic. He presents his own challenges because we often don’t know how he is feeling as that is sometimes hard for him to express. He sees things in black n white.
Kayla on the other hand, is beautiful, creative artist and can express her thoughts and feelings very well when she wants to. However, she internalizes a lot of her emotions as well. Especially when it comes to her sister. She feels left out and unseen. Her whole life she has been dealing with the focus primarily on Noah and his autism, as that has taken a lot of our attention. Then she gets hit with her baby sister having an inoperable, non-curable brain tumor and is most likely going to die in 12-18 months, according to the doctors. How would you handle that?”
[#ThroughMyEyes | Kayla Barron] “My thoughts are kinda fuzzy. I don’t try to think about it too much. But it’s always in the back of my mind. I’m just always worrying. Is this the last birthday I’ll spend with her? Will she get to go kindergarten? Will she reach my age? Is this her last Christmas? Will she make it to Halloween? What if something happens? What if I lose her? What will I do then? Will anyone care? Will they forget her?
I’m just so scared of what could happen. There are so many possibilities. You never know what’s gonna happen next. I just don’t want her to be in any pain if the time comes. I don’t even want to think that the time will come, but sometimes I do.
When nothing else makes me happy… she does, so what will happen when she isn’t here? She’s my best friend from day one. Even if she doesn’t understand half the time. I’m just not even sure what I’m gonna do.
What I am most scared about is if/when something happens there will be nothing I can do to help her and all I can do is sit there and watch her suffer. I’m also scared that I’m going to think it’s all my fault and I wasn’t a good enough sister. I’m gonna have to think about all the things I didn’t get to do with her. I just really don’t want to feel like I have nothing left again.”
[#ThroughMyEyes | Lynn Barron] “For both our children, I worry about how the experience of having a baby sister with a terminal illness is shaping them. I think about what lasting impacts this will leave and what scars will remain. Is this something they can turn from a negative, sad experience into something positive and impactful?
We all have choices. To look at this as a tragedy or as an awakening.
I don’t know how this experience is going to shape them as adults. Only time will tell. I pray, they are able to draw from this experience and turn it into an awakening, a movement, something that drives them to be better, to express kindness, to seek victory in the small things in life and ultimately to cherish every moment they have and take nothing for granted.”
No child should have to endure what Mackenzie might have to. No family should be on pins and needles every second of each day questioning if and when the cancer will start taking over. No sibling should be worried about watching their little sister suffer. It’s hard to read. But it’s this families real life on how childhood cancer has affected them. We applaud them for the courage to let our supporters in on their innermost thoughts and pain. This is childhood cancer. Are you aware now?
*** THROUGH MY EYES: THIS IS CHILDHOOD CANCER SERIES
Raising money to fight rare childhood cancer
Firebirds Wood Fired Grill is teaming up with the Isabella Santos Foundation with a fundraising brunch. This event will take place after the 12th Annual 5k/10k For Kids Cancer on Saturday, September 28th.
Today on QC@3 Chef Steve Sturm cooked up a couple of smoked pork and scrambles egg tacos with jacks cheese and avocado pico.
Recipe:Makes 4 Tacos4 each – 4 or 5” Flour or corn tortillas1 cup pulled pork1 cup scrambled eggs½ cup shredded jack cheese1 cup avocado PicoHeat taco shells and pork in a sauté panLayer each tortilla with ¼ cup of pork, ¼ cup scrambled eggs, tbsp. shredded jack cheese and ¼ cup avocado PicoSub RecipesSmoked Pork Butts- season with your favorite seasoning and smoke until falling apart. Remove bone and excess fat and pull meatAvocado Pico De Gallo – (1/2 cup Diced avocado, ½ cup Diced, Tomatoes, ¼ cup Diced Red Onion, ¼ cup Cilantro, 1-2 tbsp. Diced Jalapenos, 2 tbsp. Olive Oil, Kosher Salt to taste, 3 tbsp. Fresh Lime Juice)